Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

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@loplady

I take Sparkle Wellness Osteo Boost and flavor my plain yogurt with it. I use just one scoop, 5 mg as that was what the studies used.

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How long have you been taking this? Has there been any improvement in your bone density! Thank you!

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@gammyb

How long have you been taking this? Has there been any improvement in your bone density! Thank you!

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Only since March and I don't have another scan until March. I'll post when I have results.

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@loplady

Only since March and I don't have another scan until March. I'll post when I have results.

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That would be great. Thank you. I’d love to have an additional boost to my bones. I’ve been on Evenity for 8 months so far and will have a bone density in February. Good luck to you.

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@alexxa

1500/mo copay?!
Unbelievable.

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I read somewhere copay may be connected to the T-score. Assuming the worst the score, the lesser the copay. Is this correct?

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@aliber your DEXA score isn't that bad. It is definitely good to see an endocrinologist because GP's tend to prescribe bisphosphonates or Prolia.

Meds for GERD can affect absorption of nutrients and can contribute to osteoporosis. If you are on Prilosec, you can get off it by using Pepcid instead then tapering 🙂 My doc helped me with that.

@madeleine40 do you qualify for Radius Assist for free Tymlos? I have a Medicare Advantage plan through BC/BS that is covering my last months. You could try to get coverage with your current plan if the doc would write that you need the adjustable dose-? But if copay is high, that is still a problem!

My endo won't use Prolia unless he absolutely has no choice due to the difficulties in getting off.

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I also didn’t want to go on any medication. So I read about Osteo Strong, a once a week workout that stimulates bone growth. I’ve been going for 7 months and decided to have a bone density test to see if it was working. It is! I was extremely pleased. My doctor still wants me to go on Prolia. I’ve decided not to and will have another bone density test in a year.
Osteo Strong has a free session. Check it out and let us know.good luck to you.

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@madeleine40

Hello Heyhey
I can totally relate to your message as I am at the same place. Not looking forward to any of these drugs, but none building seems to be in order.
Forteo was approved, but I cannot afford the $1500/month copay. Tymlos was not approved.
My GP now recommends Prolia, but I believe this is a different kind of drug and I’d rather build bone before locking it in. I also do not want to take a drug just because my insurance may cover it.
Could anyone tell me what Medicare drug supplement plan covers Tymlos ? I’d like to change plans in December to have more choices. I am in Southern California.
Per previous comments, it appears I should see an endocrinologist to get a second opinion.
Thank you for any feedback you may have.

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I am on Evenity and seem to have no side effects. I have traditional Medicare and it is covered 100% under Part B because I have the injections at an infusion center.
Other non-traditional Medicare plans like Medicare Advantage plans are different. They seem to all have different rules about these drugs.
Open enrollment starts October 15 and you can change Part D plans then if you want.
I have never changed my plan because the Part D plan that I have is fine. Also, the Evenity is covered by Part B. Every year, however, I call Medicare - 1-800-med-icar- and review my husband’s Part D plan. He is on a lot of expensive drugs and the formulary changes year to year. This is a project, but important.
I call Medicare during open enrollment and the well trained, helpful person on the phone already knows what drugs he’s on, where he’s getting them, how much they cost, etc. They will then look at other plans with me and we figure out what is best for the coming year. If he changes plans, the Medicare rep on the phone can do that right then.
I have been doing this for 20 years for seniors on Medicare. Now I’m a senior and vigilant about this.
Just remember that the Part D plans are all private entities, therefore, they have a profit motive. Medicare is not for profit and doesn’t care what plan you choose. So, you will get unbiased information from them.

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@madeleine40

Hello Heyhey
I can totally relate to your message as I am at the same place. Not looking forward to any of these drugs, but none building seems to be in order.
Forteo was approved, but I cannot afford the $1500/month copay. Tymlos was not approved.
My GP now recommends Prolia, but I believe this is a different kind of drug and I’d rather build bone before locking it in. I also do not want to take a drug just because my insurance may cover it.
Could anyone tell me what Medicare drug supplement plan covers Tymlos ? I’d like to change plans in December to have more choices. I am in Southern California.
Per previous comments, it appears I should see an endocrinologist to get a second opinion.
Thank you for any feedback you may have.

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Check with your endocrinologist
's billing people. They may be able to tell you which plan covers the most

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@madeleine40

Hello Heyhey
I can totally relate to your message as I am at the same place. Not looking forward to any of these drugs, but none building seems to be in order.
Forteo was approved, but I cannot afford the $1500/month copay. Tymlos was not approved.
My GP now recommends Prolia, but I believe this is a different kind of drug and I’d rather build bone before locking it in. I also do not want to take a drug just because my insurance may cover it.
Could anyone tell me what Medicare drug supplement plan covers Tymlos ? I’d like to change plans in December to have more choices. I am in Southern California.
Per previous comments, it appears I should see an endocrinologist to get a second opinion.
Thank you for any feedback you may have.

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I live in Kansas & we have Senior Center's here. Beginning in October they
take appts to help you decide what drug plan is best & least expensive for you.
their is no charge as all are volunteers.
They also help folk with their tax prep= no charge= volunteers.

Look for Senior Centers in your area.
We lived in Orange Co. ( the 60's) & then north in Tarzana in the 70's.
Loved going to Disneyland when it wasn't so expensive & Knott's Berry Farm when it was FREE. In Tarzana my son saw peacocks on his walk to school.

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I am facing same concerns in mid 70’s I have had bone pain for a few years had taken weight bearing exercise seem to help,had bone density test now my Dr. wants me to consider taking injections, I have to decide in another day I live alone do not want to depend on anyone I am considering taking Collagen, from what I read the results seem to helpful so undecided

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